Tilburg University
The discussion of sexual dysfunction before and after kidney transplantation from the
perspective of the renal transplant surgeon
Van Ek, Gaby F.; Krouwel, Esmée M.; Van Der Veen, Els; Nicolai, Melianthe P. J.; Ringers,
Jan; Den Oudsten, Brenda L.; Putter, Hein; Pelger, Rob C. M.; Elzevier, Henk W.
Published in: Progress in Transplantation DOI: 10.1177/1526924817731885 Publication date: 2017 Document Version
Publisher's PDF, also known as Version of record
Link to publication in Tilburg University Research Portal
Citation for published version (APA):
Van Ek, G. F., Krouwel, E. M., Van Der Veen, E., Nicolai, M. P. J., Ringers, J., Den Oudsten, B. L., Putter, H., Pelger, R. C. M., & Elzevier, H. W. (2017). The discussion of sexual dysfunction before and after kidney transplantation from the perspective of the renal transplant surgeon. Progress in Transplantation, 27(4), 354-359. https://doi.org/10.1177/1526924817731885
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The Discussion of Sexual Dysfunction
Before and After Kidney Transplantation
From the Perspective of the Renal
Transplant Surgeon
Gaby F. van Ek, MD
1,5, Esme´e M. Krouwel, MD
1,5, Els van der Veen, MD
1,
Melianthe P. J. Nicolai, MD, PhD
1,5, Jan Ringers, MD
2,
Brenda L. Den Oudsten, PhD
3, Hein Putter, PhD
4,
Rob C. M. Pelger, MD, PhD
1, and Henk W. Elzevier, MD, PhD
1,5Abstract
Introduction: Sexual dysfunction (SD) is a common problem in chronic kidney disease (CKD) and endures in 50% of patients after kidney transplantation (KTx), diminishing patients’ expectations of life after KTx. Unfortunately, SD is often ignored by renal care providers. Research questions as part of a research project among all renal care providers, transplant surgeons’ perspectives were obtained on sexual health care for KTx recipients, including their opinion on who should be accountable for this care. In addition, surgeons’ practice and knowledge regarding SD were evaluated. Design: A 39-item questionnaire was sent to all Dutch surgeons and residents specialized in KTx (n¼ 47). Results: Response was 63.8%. None of the respondents discussed SD with their patients, before or after surgery. Most important barrier was that surgeons do not feel accountable for it (73.9%); 91.7% thought this accountability should lie with the nephrologist. Another barrier was insufficient knowledge (39.1%). In 75% of the respondents, (almost) no knowledge regarding SD was present and 87.5% noticed education on SD was insufficient during residence training. Discussion: Dutch renal transplant surgeons rarely discuss SD with their patients with CKD, as they do not feel accountable for it; this accountability was appointed to the nephrologist. Knowledge and education regarding SD were found insufficient in enabling surgeons and for some it reflects in barriers toward discussing SD. Results emphasize that accountability for providing sexual health care to patients with CKD should lie elsewhere; however, surgeons could briefly provide information on sexual health after KTx, so unfulfilled expectations may be prevented.
Keywords
practice patterns, renal transplant surgeons, sexual dysfunction, quality of life, questionnaires
Introduction
Sexual dysfunction (SD) is a common and underestimated prob-lem in both men and women with chronic kidney disease (CKD).1Disturbances in sexual function are first noticed in the early phase of kidney failure and deteriorate further as renal function declines.1,2Sexual dysfunction has a strong negative impact on patients’ quality of life (QoL), and deterioration of QoL due to SD has been reported in both male and female patients with CKD.3-5Adding to patients’ personal burden, SD affects social and married life.6Decreased partner satisfaction is a common problem; 50% of both male and female partners had decreased libido.7In male patients, 70% had erectile dysfunction (ED). Other sexual problems reported by men are reduced libido, difficulty in achieving orgasm, and anejaculation.1,8In female patients, sexual issues are twice as frequent compared to the general population; during dialysis, the prevalence of SD
1Department of Urology, Leiden University Medical Center, Leiden, The
Netherlands
2Department of Transplant Surgery, Leiden University Medical Center, Leiden,
The Netherlands
3Department of Medical and Clinical Psychology, Center of Research on
Psychological and Somatic Disorders, Tilburg University, Tilburg, The Netherlands
4Department of Medical Statistics, Leiden University Medical Center, Leiden,
The Netherlands
5
Department of Medical Decision Making, Leiden University Medical Center, The Netherlands
Corresponding Author:
Gaby F. van Ek, Department of Urology, Leiden University Medical Center, Albinusdreef 2, PO Box 9600, 2300 RC Leiden, The Netherlands.
Email: g.f.van_ek@lumc.nl
Progress in Transplantation 2017, Vol. 27(4) 354-359
ª2017, NATCO. All rights reserved. Reprints and permission:
increases to 70%.9,10 Sexual issues reported by women are reduced libido and lubrication, difficulty in getting aroused, pain during intercourse, and difficulty in achieving orgasm.1,10The etiology of SD is often multifactorial. Besides the uremic milieu, factors such as comorbid illness, anemia, hormone disturbances, autonomic neuropathy, vascular diseases, hyperparathyroidism, hyperprolactinemia, side effects due to medication, and psycho-social factors all contribute to the existence of SD.1,2
Kidney transplantation (KTx) prolongs the life of patients with CKD and will enhance survival rates as well as QoL.11,12Due to normalization of the hormonal disturbances, transplantation improved sexual health (eg, libido), energy, and fertility.13,14 However, after transplantation, the prevalence of SD still remains 46% in both men and women.15For instance, literature reports that kidney transplant recipients experience unusual hair growth (69.7%), decreased interest or ability to perform or respond sexu-ally (60.9%), and changes in body shape (54.8%).16 Immunosup-pressive medication prescribed after transplantation also contribute to impotence in men and loss of sexual interest in both men and women.17The persistence of SD after receiving a kidney transplant negatively influence patients’ well-being, as research has shown sexual side effects after renal transplantation have the most negative impact on life satisfaction after transplanta-tion.16,18,19Due to a shortage of organ donors, patients are more likely to receive a living donor kidney transplant from a relative or partner.20 As a result, the relationship between recipient and donor may deteriorate as recipients may feel they owe the donor or are afraid to disappoint if they lose the graft.21
Despite the evidence SD is a clinically relevant problem in patients with CKD before and after transplantation, this issue is often neglected in research as well as daily practice.22Sexual health is often ignored by health professionals during consulta-tion, particularly after transplantation.23,24Motives for under-valuation of SD by renal care providers remain uncertain. This information is essential in order to be able to enhance current situation for patients with CKD.
Specific Aim
This cross-sectional study focused on current practice, opi-nions, and barriers of Dutch transplant surgeons regarding the discussion of SD with patients with CKD waiting for or after receiving a kidney transplant. In addition, this survey addressed surgeons’ level of knowledge and received education on SD in patients with kidney disease.
Design and Methods
Design, Setting, and Population
Data for this cross-sectional survey were collected using a questionnaire sent to all Dutch practicing surgeons and trans-plant fellows (n¼ 47). In the Netherlands, kidney transplanta-tions are generally performed by transplant surgeons with a small minority by vascular surgeons. The study sample was obtained by contacting all Dutch transplantation centers (n¼ 9) to enquire information on their practicing surgeons and
fellows. To ensure all Dutch transplant surgeons were reached, members of the Dutch Transplantation Association who specialized in KTx were included. Pediatric surgeons were excluded, as this study focused on patients over 15 years old. The Medical Ethics Committee of the LUMC Leiden reviewed the study and declared that for this analysis, without any inter-ventions or patients, no formal ethical approval was needed.
Instrument Design and Development
The questionnaire used for this survey was developed by the authors, including an urologist-sexologist (H.W.E.) and a trans-plant surgeon (J.R.). The structure and design of the question-naire were derived from questionquestion-naires used in previous studies regarding sexuality and health-care providers, with items based on issues described in literature and additional themes identi-fied by the authors.25-27The survey was pilot tested by 5 trans-plant surgeons from the Leiden University Medical Centre. No adjustments were needed according to their comments. The pilot questionnaires were included for analysis because the definitive questionnaire remained unchanged.
The 39-item questionnaire contained multiple choice and open-end questions (available in the Online Supplementary material). Answers to the questions will be interpreted with the use of quantities and percentages. The first page consisted of demographic questions as well as an opt-out possibility. The reason for withdrawal could be noted. The second part of the questionnaire focused on current practice, potential barriers, and opinions of transplant surgeons with regard to discussing SD during consultation.
Data Collection and Procedure
All surgeons received the questionnaire at their work address; nonrespondents received a reminder letter 2 and/or 3 months after the initial mailing. All data were processed anonymously.
Data Analysis
Data analysis was performed by using IBM SPSS statistics v20 (IBM Corp, Armonk, New York). Gender and hospital location of respondents as well as nonrespondents were known . To make a comparison between nonrespondents and respondents, hospitals were classified by population density of the area. Class I included areas with a population density of 907 or less citizens per km2, class II had a population density of more than 907 citizens per km2. Age of nonrespondents remained unknown. Descriptive sta-tistics and the Pearson w2test were used to compare demographic information of nonrespondents with demographics of the respon-dents. Demographic information of respondents and results of the survey were analyzed using descriptive statistics. Bivariate asso-ciations between demographic information and categorical data were calculated by using the Pearson w2test. The independent sample t test was used to calculated bivariate associations in case of numerical data. Outcomes were considered statistically signif-icant if the 2-sided P values were <.05.
Results
Survey Responses
Thirty of the 47 questionnaires, including the 5 pilot question-naires, were sent back resulting in a response rate of 63.8%. Three respondents were not willing to participate, reasons for not participating were “not enough experience” (n¼ 2) and “I don’t follow-up on patients” (n ¼ 1). One participant was excluded due to an incomplete questionnaire. Additionally, 1 surgeon specialized in recovering deceased donor kidneys for transplantation and 1 pediatric surgeon were excluded (n¼ 2). Twenty-four (51.1%) of the 47 surveys sent were analyzed.
Demographics
Demographic comparison between respondents and nonre-spondents is listed in Table 1. There was no significant differ-ence in the distribution of gender or hospital location between respondents and nonrespondents (w2test, P¼ .47 and P ¼ .07). Table 2 illustrates the demographic and practice character-istics of the analyzed respondents. The majority of the respon-dents was male (n¼ 17, 70.8%).
Current Practice
When asked to describe current practice, all respondents answered (n ¼ 24, 100%) that they (almost) never discussed SD with their patients before or after surgery. The large major-ity of the surgeons (n ¼ 23, 95.8%) noticed that patients (almost) never express their sexual concerns spontaneously. Only 1 respondent experienced that patients express their con-cerns spontaneously in less than half of the cases.
Respondents were asked if the partner was present when SD was discussed. Almost 60% of the respondents (n ¼ 10) answered that the partner was (almost) never present when SD was discussed and 11.8% (n¼ 2) said in less than 50% of the cases. Other answers given were in 50% of the cases (n¼ 1, 5.9%), in more than 50% of the cases (n¼ 2, 11.8%) and (almost) always (n¼ 2, 11.8%). On the question “How often do you tell your patients about the effect of immunosuppressant’s on sexual function?” 81.8% (n¼ 18) answered to never do so.
The answers seldom and sometimes were both given by 2 (9.1%) respondents.
The majority of the respondents (n ¼ 22, 90%) never inquired if their male patients use phosphodiesterase type 5 inhibitors. None of the respondents prescribed this type of medication to their patients with CKD.
Knowledge and Training
Surgeons were asked to rate their current knowledge level of SD. Seven (29.2%) respondents thought that they had some knowledge necessary to discuss SD, 60% (n ¼ 14) stated to have not much, and 12.5% (n ¼ 3) had no knowledge at all. None of the surgeons thought they had a lot of knowledge. Thirty percent (n¼ 7) considered themselves in need for addi-tional training in order to properly discuss SD with patients. In answer to the question “Do you think sufficient attention is paid to SD as well as treatment options during residence training?” 87.5% (n¼ 21) replied negatively.
Barriers
The questionnaire contained a list of possible barriers to discuss SD during consultation, and the transplant surgeons were asked to which extent they agreed with those barriers. The list includ-ing surgeons’ answers is listed in Table 3. The main barrier to discuss SD during consultation is that surgeons do not feel accountable to do so (n ¼ 17, 73.9%). Almost 40% (n ¼ 9) of the respondents agreed that insufficient knowledge is an important barrier as well. However, 8 (34.8%) respondents dis-agreed and 6 (26.1%) were indecisive on this. In addition,
Table 1. Demographic Comparison Between Nonrespondents and Respondents. Variables Nonrespondents, n (%) Respondents, n (%) P Valuea Gender Male 15 (88.2%) 24 (80.0%) .47 Female 2 (11.8%) 6 (20.0%) Population density of hospital area 907 citizens per km2 9 (52.9%) 22 (73.3%) .72 >907 citizens per km2 8 (47.1%) 8 (26.7%)
aP values <.05 were considered statistically significant.
Table 2. Respondent Characteristics (n¼ 24).
Variables n (%) Age, years Mean: 45.38 (SD: 7.0) 24 (100.0) Gender Male 17 (70.8) Female 7 (29.2) Work position Transplant surgeon 10 (41.7)
Transplant and vascular surgeon 9 (37.5)
Vascular surgeon 1 (4.2)
Fellow transplant surgeon 3 (12.5)
Fellow transplant and vascular surgeon 1 (4.2)
Work experience (years)
<1 3 (12.5) 1-2 2 (8.3) 3-5 3 (12.5) 6-10 4 (16.7) 11-15 5 (20.8) >15 7 (29.2) Type of hospital University hospital 22 (91.7)
District general teaching hospital 1 (4.2)
University and district general hospital 1 (4.2)
insufficient training was a barrier for 5 respondents (21.7%), while 14 (60.9%) respondents did not consider this aspect as a barrier.
Accountability and Local Agreements
The survey addressed whether clear agreements have been made within their department with regard to which care provi-der is accountable for discussing SD with patients CKD. Fifty percent (n¼ 12) had no clear agreements within their depart-ment, a third (n¼ 8, 33.3%) was unaware of such agreements. Four (16.7%) surgeons responded that clear agreements were present.
When asked which renal care providers should be accoun-table for discussing SD, the majority (n¼ 22, 91.7%) of the surgeons answered the nephrologist. Only 1 respondent agreed with the statement that this accountability should lie within their own group of professionals.
Focusing on the referral of patients with sexual issues to professionals specialized in SD, 19 (82.6%) respondents were
aware of this possibility at their workplace. Four (17.4%) respondents were unaware of this possibility. The estimated percentage of patients referred to a sexual health-care provider was less than 1%.
Discussion and Conclusion
The present study revealed Dutch renal transplant surgeons rarely discuss sexual health concerns with their patients with CKD. Multiple factors may contribute to this finding. First of all, transplant surgeons skip the discussion of SD due to their perception that other renal care providers are accountable. The majority of the surgeons stated that the accountability should lie with the nephrologist. Previous research among nephrolo-gists showed that this opinion is shared by this group of pro-fessionals since they pointed out themselves to be accountable for discussing SD with patients with CKD.25 However, the same study also revealed that more than 90% of nephrologists often skip SD discussion as well. Seen in this light, there might be a role for other renal care providers (eg, dialysis nurse, and social worker) in discussing and detecting SD. At least, clear agreements should be made within medical departments regarding which care provider should be accountable for sexual health care since only a small percentage of the respondents in this survey were aware of the presence of such agreements. By formulating clear agreements within all nephrology depart-ments, the incorporation of sexual health care for patients with CKD into current health-care system might be facilitated.
Second, an important factor that may contribute to the cur-rent undervaluation of SD is the lack of knowledge among surgeons on SD in CKD. The majority of Dutch surgeons had insufficient knowledge on SD, and some also noted insufficient knowledge as a barrier to discuss SD with their patients. These outcomes might be a result of inadequate education on SD in CKD since the vast majority of the surgeons stated that this subject is not addressed sufficiently in current educational sys-tem. In order to fully understand the impact of SD on patients with CKD, improvement of surgeons’ current level of knowl-edge on SD might be helpful. By incorporating adequate edu-cation into residence training, the level of knowledge on sexual health of this group of renal care providers will be improved, and awareness might be raised on the importance of this part of renal health care. For surgeons currently practicing, supple-mentary training could be provided.
This study evaluated clinical practice of transplant surgeons regarding SD in patients with CKD. Unfortunately, the omis-sions in sexual health care by physicians are present in many, if not all medical departments for illnesses that highly affects sexual function, for example, cardiology and surgical oncology.26,27The same applies for the department of nephrol-ogy, accountable for substantial part of renal health care.25 Undervaluation of SD by care providers is recognized by patients with CKD, as several studies on patient-centered perspective reported little attention is paid to psychosocial sup-port, including sexual health.13,23,24 Besides, patients avoid addressing SD during consultation with their physician; in their
Table 3. Barriers not to Discuss Sexual Dysfunction.a
Barriers Agree n (%)b Indecisive n (%) Disagree n (%)c
Someone else is accountable for discussing SD
17 (73.9%) 5 (21.7%) 1 (4.3%)
Insufficient knowledge 9 (39.1%) 6 (26.1%) 8 (34.8%)
Patients do not express SD spontaneously
9 (37.5%) 3 (12.5%) 12 (50.0%)
Insufficient training 5 (21.7%) 4 (17.4%) 14 (60.9%)
High age of the patient 5 (20.8%) 2 (8.3%) 17 (70.8%)
Barriers based on culture or religion
4 (16.7%) 3 (12.5%) 17 (70.8%) Could not find a suitable
moment
3 (13.0%) 6 (26.1%) 14 (60.9%) Barriers based on language or
ethnicity
2 (8.7%) 4 (17.4%) 17 (73.9%) Patient is not ready to discuss
SD
2 (8.7%) 1 (4.3%) 20 (87.0%)
Sex is private 2 (8.7%) 0 (0.0%) 21 (91.3%)
No connection with the patient 2 (8.3%) 1 (4.2%) 21 (87.5%) SD is not a problem for the
patient
1 (4.3%) 9 (39.1%) 13 (56.5%) Patient is too ill to discuss SD 1 (4.3%) 5 (21.7%) 17 (73.9%) Afraid to offend the patient 1 (4.2%) 2 (8.3%) 21 (87.5%)
Sense of shame 1 (4.2%) 1 (4.2%) 22 (91.3%)
Insufficient time 0 (0.0%) 6 (26.1%) 17 (73.9%)
Presence of a third person 0 (0.0%) 5 (20.8%) 19 (79.2%) I feel uncomfortable to talk
about SD
0 (0.0%) 3 (12.5%) 21 (87.5%) Age difference between yourself
and the patient
0 (0.0%) 1 (4.2%) 23 (95.8%) Patient is of the opposite sex 0 (0.0%) 0 (0.0%) 24 (100.0%)
Abbreviation: SD, sexual dysfunction.
a
n differs because the questions were not answered consistently, and some were skipped or forgotten.
bAgree contains the answers “totally agree” and “agree”. cDisagree contains the answers “totally disagree” and “disagree”.
perception, physicians may react reluctant and disinterested.28 Awareness of patients’ concerns and burdens should be raised among transplant surgeons, and other renal care providers, to enhance the current situation.
Recommendations for Practice
Providing information on sexual health to patients with CKD awaiting KTx is extremely important, as they hold high expec-tations on life after transplantation and tend to overestimate the improvements of QoL.11,12,15If information is provided in the preoperative setting on sexual health after transplantation, these unfulfilled expectations might be prevented and it might encourage patients to discuss SD after transplantation if neces-sary. Considering surgeons’ daily practice, the accountability for providing extensive sexual health care to patients with CKD should not lie within this group of professionals. However, managing patients’ expectations of surgery is part of the pre-operative care provided by surgeons. Therefore, it could be important for transplant surgeons to mention that, although transplantation tends to improve sexual health, the persistence of SD after transplantation is not uncommon.
Strength and Limitations
The perspective of renal transplant surgeons on sexual health was explored in this descriptive study. Unfortunately, formal comparison with literature was limited. In addition, due to the low response rate, nonresponse bias may have occurred and might have decreased the statistical power of the study. The study was performed using a nonvalidated questionnaire due to the nonexistence of validated questionnaires exploring all study aims. As a consequence, the answers given by the respon-dents may have been biased due to subjective questioning. The questionnaire was not tested for validity, as this instrument will not be reused. Also, the self-reported character of the question-naire may have caused respondents to provide socially desir-able answers. Finally, this study was performed in a single country, so findings may not represent the current situation worldwide.
Conclusion
Dutch surgeons performing KTx omit discussions of SD with their patients with CKD. They do not feel accountable to do so and think this accountability should lie with the nephrologist. Moreover, insufficient knowledge and inadequate education regarding SD are issues present in this group of professionals and for some surgeons they even reflect in present barriers toward the discussion of SD. By providing adequate sexual education to (future) transplant surgeons, level of knowledge could be enhanced and awareness could be raised on the impor-tance of sexual health. The results emphasize that accountabil-ity for providing extensive sexual health care to patients with CKD should lie with another renal care provider. However, surgeons could briefly provide information during preoperative
consultation on sexual health after transplantation so unful-filled expectations in transplant recipients might be prevented. Finally, the development of multidisciplinary medical proto-cols on which renal care providers has the accountability to discuss SD may lead to improvement, as it could serve as the foundation for sexual health care for patients with CKD. Acknowledgments
The authors thank all Dutch transplant surgeons who took the time to fill out the questionnaire. Linguistic supervision was performed by Emma Horton, MD.
Declaration of Conflicting Interests
The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.
Funding
The author(s) received no financial support for the research, author-ship, and/or publication of this article.
Supplemental Material
Supplementary material for this article is available online.
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